INTERNATIONAL SYMPOSIUM ON COHORT AND LONGITUDINAL STUDIES IN LOW AND MIDDLE INCOME COUNTRIES

Florence, Italy 13-15 October 2014 Meeting Report TABLE OF CONTENTS

SUMMARY 1

KEYNOTE ADDRESS 2 The role of cohort and longitudinal research in developing evidence for improved policies on child well-being

SYMPOSIUM PANELS 4

Impacts of inequality on children’s well-being 4 Societal and community influences across the life-course 5 Childhood risk and resilience 6 Comparability of measurement instruments across ages and contexts 8 Innovations in design and measurement 9 The practicalities of cohort and longitudinal research 10 Cohort research for programme and policy 12 Sustainability and ownership 13 Collaboration and creating a community of practice 14

CLOSING DISCUSSION: 15 WHAT IS NEXT FOR LONGITUDINAL STUDIES?

This document was written by Prerna Banati, with inputs from Ina Zharkevich.

The UNICEF Office of Research–Innocenti works to improve international understanding of issues relating to children’s rights and to help facilitate full implementation of the Convention on the Rights of the Child in developing, middle-income and industri- alized countries. Publications produced by the Office are contributions to a global debate on children and child rights issues and include a wide range of opinions. For that reason, some publications may not necessarily reflect UNICEF policies or approaches on some topics. The views expressed are those of the authors and/or editors and are published in order to stimulate further dialogue on child rights.’

Cover photo: © UNICEF/NYHQ2013-1487/Pirozzi UNICEF Office of Research - Innocenti

SUMMARY

This International Symposium hosted measures. The group uncovered ways in by UNICEF’s Office of Research in which longitudinal data informs social collaboration with Young Lives, brought interventions and policies to address together longitudinal studies operating the problems which confront children in twenty-five low, middle and high and adolescents in different contexts. income countries. These experts Discussions explored determinants of explored how to strengthen data, design local ownership and sustainability of and coordination for improved policy- longitudinal studies, including areas for making and programmes. A key theme of capacity building and support to national the meeting was to reflect on the unique statistics and data collection systems. nature of this type of data collection, and exploit its comparative advantage. Data collection is seen as one of the priority areas of the Sustainable In their presentations, speakers Development Goals and in the push for examined challenges in designing and better quality data, special emphasis is carrying out longitudinal research, placed on timely and quality reporting explored methodological approaches at low cost. The meeting explored and innovations and shared research how longitudinal research can better findings. The discussions addressed the contribute to monitoring progress value added of a cohort approach, and against the post-MDG targets, and raised illustrated ways in which these types of the potential of a core dataset of an SDG data can inform policy. cohort to respond to measurement needs of the next round of development goals. At the Symposium, participants shared cutting-edge, substantive results The Symposium concluded with of studies and went beyond simple a discussion on new avenues of measurements. Findings focused on collaboration, including exploring deeper understandings of outcomes the formation of a global network of and determinants behind outcomes longitudinal research. and located children’s and adolescents’ developmental trajectories within the life-course - something which can be achieved only by using longitudinal data.

Lessons were shared on the practice of longitudinal studies operating in diverse contexts, identifying opportunities for synergies and coordination among the group, including in methods and

Meeting Report - Cohort and Longitudinal Studies in Low and Middle Income Countries • 1 UNICEF Office of Research - Innocenti

KEYNOTE ADDRESS : THE ROLE OF COHORT AND LONGITUDINAL RESEARCH IN DEVELOPING EVIDENCE FOR IMPROVED POLICIES ON CHILD WELL-BEING Stefan Dercon (Chief Economist, UK’s Department for International Development)

The speaker discussed the potential for the UK Household Survey Panel data longitudinal studies to have wide impact. showed that higher-ability children from In reality, many policy-making decisions more disadvantaged backgrounds were are based on more than evidence alone overtaken by less able children from and it’s important to ensure that the privileged background by the time of questions asked in longitudinal studies school entry. Only a longitudinal dataset are the kind that these types of studies would be able to show developmental are best suited to answer. Longitudinal trajectories of children from different research has definite strengths, including backgrounds over time. By conclusively investigating mobility and movements pointing to the problem the study had a into and out of poverty, catching up or big impact: the government introduced not catching up in terms of growth, the free pre-school provision in the UK. divergence or convergence of learning outcomes and about the impact of The most powerful, but often the most early childhood on later outcomes. neglected aspect of longitudinal data, Longitudinal studies can also provide is measurement and description. There excellent evidence on the long-term is great scope to use panel datasets for impact of shocks, risks and crisis, the analysis of patterns and for description. impact of agricultural policies and food It is vital not to use longitudinal datasets price shocks. to measure levels because samples may not be representative or attrition rates Longitudinal studies should exploit may be high. Furthermore, longitudinal their absolute advantage and explore data should not be analysed during the questions which cannot be properly the first two rounds of data collection, answered by other datasets, such because the mere aim of panel datasets as cross-sectional data. Instead of is to see the development of patterns competing with Randomized Control over time. Trials (RCTs), longitudinal studies should find the areas where they have Analysis of the heterogeneity of an ‘absolute advantage’. What data patterns, trajectories and movement and evidence can be generated from is the strength of panel datasets, and longitudinal studies which cannot be include catch-up in nutrition, movement generated otherwise? For example, in and out of poverty and learning negative evidence, which sometimes trajectories for example. Describing become evident only in panel datasets, the patterns, not measuring the mean is also important. . or making causal analysis, is the core of the longitudinal studies, because it Sometimes the best way to inform essentially tells us what is happening. policy is not to offer a solution but rather Telling policy-makers that children’s to highlight the problem. For instance, learning trajectories in rural areas are

2 • Meeting Report - Cohort and Longitudinal Studies in Low and Middle Income Countries UNICEF Office of Research - Innocenti different from that in urban areas is on the types of questions that will be valuable in itself. most needed down the line. If you want to study what is happening versus Longitudinal studies, by virtue of what should be happening, one should design, can identify areas that may clearly make a longitudinal study or require intervention and those which do an observational dataset. The impact not require intervention. For instance, if of policies should also be studied with data shows that certain things converge longitudinal datasets. While longitudinal naturally, policy-makers would not have studies might seem to be costly, they to prioritize such areas in contrast to the are not more expensive than RCTs. ones where there is persistence over time. If longitudinal research shows the There are common fallacies when time when divergence in trajectories designing longitudinal studies that start, policy-makers know how to time should be avoided. Attrition rates can the intervention. be too high to make the study realistic. If the study loses 15 per cent of its Longitudinal studies can embrace participants in each round, then the serendipitous development. One cannot study loses its meaning. Tracking can always predict the kind of problems or be costly, but it is a cornerstone of any issues which will arise within longitudinal longitudinal study. Secondly, often too studies. Longitudinal datasets provide few clusters are included. One has to a platform for taking into account have enough variation to show the unplanned processes and for picking impact of price shocks or some other up problems not envisaged before the processes. Therefore it is better to have studies are planned. For instance, one more clusters with fewer people. Thirdly, of the longitudinal studies in Tanzania comparison groups are often lacking, could look at the relationships between such as following one cohort only, not HIV/AIDS and orphanhood in the ways accounting for difference by age, gender, unachievable through an RCT. caste, ethnicity etc. Lastly, studies can do better in planning identification Longitudinal studies expose long-term at the design stage. Experimental change in contexts. Longitudinal studies variation can provide ways of identifying provide strong evidence on the impact particular problems. For instance, one of famine (the example of Ethiopia), of could build in the distribution of small land reforms and price shocks etc. While cash grants during the early design. This many longitudinal studies do not intend would provide a source of exogenous to study the impact of such crises on variation on sources of social-economic economic processes, they can be well advantage early on (the speaker positioned to do so when such crises notes the importance of doing such strike. interventions in an ethical way).

Design is key to a good longitudinal study and should draw on these studies’ absolute advantage. Longitudinal studies should focus on areas within its ‘absolute advantage’, with clarity

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SYMPOSIUM PANELS: REFLECTIONS ON CHALLENGES AND OPPORTUNITIES FOR LONGITUDINAL RESEARCH IN LOW INCOME SETTINGS, IDENTIFYING LESSONS AND BEST PRACTICES FOR FUTURE STUDIES

IMPACTS OF INEQUALITY Mauritius mother’s education starts to ON CHILDREN’S WELL-BEING be a significant factor in accounting for cognitive gaps only at age 11.

The panel presented studies which Some measurement indicators, such as focused on understanding the drivers of schooling or nutrition tests of children inequalities across a range of contexts. are inadequate in low and middle It also raised questions about the policy income settings. The findings from impact of the studies, the adequacy Mauritius and South Africa show that of measurement indicators used in measurement indicators used in school institutional contexts and the potential systems might not always be accurate for catch-up beyond the first three years. for assessing cognitive development of Summary outcomes are described children. In fact, both studies indicate below. an institutional bias against children belonging to disadvantaged groups. For instance, in South Africa, where Longitudinal studies provide unique researchers were interested in grade insights into the drivers of inequalities repetition, test scores for black children and how they are transmitted inter- were less predictive of grade progression generationally. The panel illustrated that longitudinal data is able to capture than for white kids. Similarly, a study of developmental trajectories of children: the Public Distribution System in India their progression through school, their on the nutritional status of children cognitive development as well as the raised important questions about how interaction of factors at the baseline we measure the nutritional status of with later outcomes. For instance, the children: including the need to include Cape Area Panel Study in South Africa diet diversity in addition to caloric and the Joint Child Health Cohort intake. Project in Mauritius demonstrate that inequalities start early in life and that The studies signalled important baseline inequalities are predictive of policy directions with implications for later outcomes. In Mauritius differences policy-makers. Questions were raised in children’s cognitive development are about whether school reforms might already evident at age three and increase address inequalities among children by age 11. Some of the most important from different backgrounds. Data from factors that are correlated with early both the South African and Mauritius divergence in cognitive development studies show baseline inequalities in in Mauritius were found to be father’s both contexts are big and predictive education and the type of the job he of later outcomes which suggest that has, i.e. skilled or unskilled labour. In interventions at the secondary school contrast to some other contexts, in level might be late. Likewise the study in

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India showed that cash distribution with in Bangladesh demonstrated that the a view to diversify people’s diet is only most effective form of distributing a short-term solution to the problem resources to improve the nutritional of poor nutrition, because cash hand- status of children was cash and training outs end, whereas people’s behaviours intervention. Thus, if people received remain unchanged. food transfer alone, especially in the form of rice, people consumed more Longitudinal studies provide compelling rice while not diversifying their diet. evidence of the importance of early When people received cash, they were years, with more focus needed to more likely to diversify their diet. It demonstrate the potential to catch up. was found that raising awareness and While the presentations in this panel providing information about quality presented conclusive data about the nutrition along with providing cash was huge impact of early gaps on later key to improving the nutritional status outcomes, it was felt that people of children. This has policy implications engaged in longitudinal studies should for programme design in showing that ask the following question: If we miss distribution of resources should be the first three years of children’s lives, accompanied by training programmes. what can be done later on? Girls’ progression through schooling is influenced by their literacy levels and SOCIETAL AND by their parents’ perceptions of their COMMUNITY INFLUENCES intelligence. Two longitudinal studies, one from Pakistan and another from ACROSS THE LIFE-COURSE Malawi, presented the findings on girls’ schooling trajectories. Despite the fact that the studies focused on This panel explored societal factors different areas – the study in Malawi and risks which affect the progression explores an association between of children through the life-course. marriage, child-bearing and literacy It focused on understanding the skills, whereas the one in Pakistan looks nature of social, family and emotional at the gender difference in school drop- environments during trajectories and out rates in Pakistan – both studies transition periods for children and found that girls who are more literate adolescents and also drew attention are less likely to drop out of school. to the role of resources such as cash Furthermore, the study in Pakistan distribution in impacting outcomes has been able to show that parental for children. Summary outcomes are investment in girls’ education follows described below. parental perceptions of their daughters’ cognitive development. It is striking Resources are not the only factor that using longitudinal data the study in that impacts the nutritional status of Pakistan has demonstrated that parents, children. Awareness and information whether educated or not, made quite is central for ensuring that people use accurate assessments of their children’s resources in a particular way. Results of abilities: parental expectations correlate the Transfer Modality Research Initiative with girls’ later tests. This study showed

Meeting Report - Cohort and Longitudinal Studies in Low and Middle Income Countries • 5 UNICEF Office of Research - Innocenti that marital decisions in Pakistan are CHILDHOOD RISK locked quite early on: if the girl goes AND RESILIENCE to school early on, she is less likely to marry early. Thus, the perception of the child’s intelligence, decisions about This session drew attention to the early enrolment in school and marital importance of going beyond the first choices in Pakistan are interlinked and thousand days and examining whether are made quite early in life. recovery and catch-up growth was possible after the first three years; Family and emotional environment as it discussed the centrality of paying well as peer group behaviour are key attention to protective and risk factors in factors behind adolescents’ transitions longitudinal research; it also discussed into and out of risk behaviours. The the stages within the life-course when findings from Vietnam provided striking policy-interventions could make a evidence of the irrelevance of knowledge difference to developmental trajectories about the harm of smoking/drinking of children. Summary outcomes are on transitions into or out of these described below. habits. Instead, social norms, including dominant norms about masculinity The centrality of longitudinal data for and femininity, peer group behaviour charting the pathways of children’s and family environment were powerful development, including cases of explanatory factors for understanding recovery and catch-up have often been children’s transitions into and out of neglected in early child development alcohol and tobacco use. literature. Based on the findings from a number of studies, the panel questioned An important consideration is ensuring the idea that the outcomes of the first the sustainability of longitudinal studies thousand days are irreversible. Findings at the time when donors withdraw. from the Young Lives project suggest The panel also drew attention to the that growth faltering is reversible up to sustainability of longitudinal studies in 12 years old: children do catch up and a situation when donors withdraw from early stunting does not seem to have a the country once the states become long-lasting impact on their cognition middle-income countries. While Vietnam on condition that they catch up. Factors has experienced positive economic which correlate with stunting correlate growth, it still lacks the capacity to with catch-up growth, which provides support longitudinal studies. Therefore a window of opportunity for policy- the work on the bulk of data gathered makers to devise interventions. It is during the study has to be done by also important to note that the story of volunteers - otherwise most of the data catch-up growth is context-specific: in gathered during the years will have to the Cebu study in the Philippines, one be shelved. could hardly find any catch-up growth in the 1980s. In order to plan interventions more effectively, we need to understand when divergence in outcomes happens, when gaps emerge and what the sources

6 • Meeting Report - Cohort and Longitudinal Studies in Low and Middle Income Countries UNICEF Office of Research - Innocenti of these gaps are. Data from various influencing child development. Likewise, studies indicates that divergence the study from Mauritius illustrated between children is based on what they that nutritional supplements, physical learn before 12 years old. Yet, exploring and emotional stimulation could have whether adolescence is another critical a positive impact on children, but the stage within the life-course could impact was bigger on children who were provide new avenues of thinking about malnourished. child development and opportunities for making change in children’s lives. Mothers’ education is central to child development and girls’ education is It is important to locate risks within the therefore key to intergenerational structural contexts in which children transfer of knowledge and ensuring grow up. Risk is not distributed arbitrary that children have support systems in within a population. Certain groups place. This finding is common to most of children are exposed to risk to a longitudinal studies. The Mauritian much greater extent and this is often study was atypical in this sense, because determined by such characteristics as it showed the increasing significance of gender, caste, ethnicity etc. In addition, mother’s education only at the age of it is important to locate children and 11. While the case of Mauritius could be their ability to cope with risk within explained by the relative homogeneity the networks of their kin, friends and of women’s education in this country associations of which they are a part of. in the 1980s, data from most other Data from Young Lives project shows longitudinal studies suggests that that children who can rely on such mother’s education is an important networks cope with adversity better factor impacting trajectories of children than children who are deprived of across a range of developmental meaningful connections. domains, from their nutritional status to cognitive development. We need to pay more attention to protective factors, moving away from Tracking what happens during pre-natal determining risk factors only. The development can also be important. Thus, Jamaican Birth Cohort study illustrates in addition to examining associations the importance of understanding between breast-feeding practices, protective factors in order to make weaning, first nutritional supplements effective policy interventions. For and stunting illustrated by the Cebu instance, while single parenting and study from the Philippines, examining violence were negatively associated pre-natal stage of development could with schooling achievement and self- provide some of the clues into early esteem in Jamaica, the study has been divergences in children’s development. able to identify protective factors which could ensure the fruitful development Cost often impacts study design and of children. In particular, the study cost effective measures for obtaining showed the importance of playtime with data may emerge over time. Most of the mothers, availability of early childhood longitudinal studies have to cope with development resources at home as funding constraints and have to devise well as mother’s education in positively ways of efficient use of budgets. The

Meeting Report - Cohort and Longitudinal Studies in Low and Middle Income Countries • 7 UNICEF Office of Research - Innocenti case-study from Jamaica shows that of each state is vital for the ability to it is possible to reduce the costs of the compare measurements across different study through using telephone calls for countries. Based on the experience of data collection. the COHORTS group, it was advised that the design of multi-country cohort studies should identify essential core COMPARABILITY OF data for each site and establish inclusion MEASUREMENT criteria, ensure the comparable timing of measurements and plan the use of INSTRUMENTS ACROSS AGES similar methods for measuring similar AND CONTEXTS outcomes.

Measuring socio-economic status might This panel addressed the questions be especially challenging in developing around the challenges of comparing country contexts. Socio-economic measurements of socio-economic status (SES) can be measured in several status across countries; discussed the different ways: in income, assets or potential errors and inconsistencies in consumption. Furthermore when one reporting across rounds of longitudinal takes into account inflation while data; explored the ways in which the use measuring SES, the task becomes even of computer-based software in contrast more complex. Income comparability is to the standard face-to-face interviews not always easy to establish, because or paper-based surveys might impact one needs to explain whose wealth, the kind of responses researchers whose income is being measured in get; and finally looked into the use of different contexts. Therefore, it has been innovative methodologies of collecting suggested that standards are needed good quality data at low cost. Summary about how to harmonise and compare outcomes are described below. measurements of SES across different contexts. Developing cross-country comparable measures requires deep context Longitudinal studies can be used specific understanding. Comparing to understand inconsistency in measurements across different countries respondents’ reporting and to estimate is a significant challenge for longitudinal errors in the data collected. The studies. Thus, cross-national research longitudinal study of adolescents’ project on socio-economic status and sexual behaviour in Malawi illustrated child development in Australia, Canada, that there might be a high degree of UK and USA demonstrated some of data inconsistency not only between the challenges in comparing not only rounds, but also within individual the more complex measurements of responses. It was common for children socio-economic status but also levels and adolescents not to know the month of educational attainment in different of their sexual initiation. Furthermore, contexts. It was stressed that working many children seemed to respond with partners from all study countries differently in face-to-face encounters. who know the economic, social Using even simple life-event tools, protection and educational systems such as ordering life-event cards,

8 • Meeting Report - Cohort and Longitudinal Studies in Low and Middle Income Countries UNICEF Office of Research - Innocenti produced inconsistent results, which of two portions of fruit per day, type raises important questions about data of milk consumed, and type of bread reliability in a variety of contexts. consumed. A cautionary word was noted that it is important to communicate The use of technology to tackle sensitive clearly the purpose and function of issues should be gender and context short batteries, as opportunities for specific. The study in Malawi on sexual misinterpretation exist. behaviours of adolescents used the computer-based system of interviewing without an interviewer (ACASI). The INNOVATIONS IN DESIGN AND findings of research were striking but MEASUREMENT also similar to the ones noted in Vietnam where researchers compared the data generated through ACASI, paper and The panel focused on exploring face-to-face interviews. In Malawi, girls innovative approaches in data collection tended to report better in face-to-face and analysis, with a view towards what encounters, whereas boys did better the next generation of longitudinal with the ACASI system. This finding studies may look like. This included points to the fact that the use of different an exploration into the ethical and methods of data collection, especially practical challenges of collecting on sensitive issues, should be gender biomarkers in longitudinal research and and context specific. the ways in which cohort studies could contribute to epigenetics. The panel Developing short batteries of questions discussed pioneering mechanisms of could prove helpful in collecting good data integration, linking household and quality data ‘quickly, accurately and at facility level data, and how existing low cost’.There has been a call to develop longitudinal studies can be creatively short batteries of questions to measure used for project evaluations in variables which otherwise would take developing countries, helping to reduce too long a time to measure. These the cost of this expensive exercise. should be easy and relatively cheap to Summary outcomes are described administer; validated against the ‘gold below. standard’; easy to standardize and compare across contexts. For instance, Longitudinal studies are uniquely instead of making observational visits positioned to make a significant to each household in order to measure contribution to epigenetics which tries family care practices and administering to understand how the environment a questionnaire which could take up to influences gene activation. Longitudinal an hour to complete, UNICEF developed studies and intergenerational studies a family care indicators questionnaire can provide rare and valuable data which is easy to administer in large on understanding how our brains population surveys. Another example is and genes are activated by social the questionnaire developed in order to environment and stimuli. In doing this measure the healthiness of the diet in a kind of research, longitudinal studies simple way. It included four questions: would be able to challenge some of the consumption of breakfast, consumption

Meeting Report - Cohort and Longitudinal Studies in Low and Middle Income Countries • 9 UNICEF Office of Research - Innocenti rigid boundaries between disciplines participants in studies which involve and expand thinking of risk factors from the collection of biomarkers. Both the point of view of individual traits to the study in South Africa and the US seeing how hereditary and biological informed people when they were ill and, factors interact with the socio-economic in the case of the US Add Health Study, environment in which children grow provided referral letters to seek medical up. The unique position of longitudinal treatment. Neither of the studies studies, such as the US Add Health provided treatment. Study and Birth to Twenty Plus Cohort in South Africa, lies in their capacity to Longitudinal studies can provide an collect both biological data and social important venue to evaluate policies environment data. Arguably, the ability and their impact. On the one hand, of longitudinal studies to explore the using longitudinal studies for impact linkages between social behaviours evaluation of distinct policies would and health, between socio-economic decrease the cost of evaluation conditions and certain biological traits exercises, while providing financial is one of the ‘absolute advantages’ of means to augment existing longitudinal cohort studies. studies. On the other hand, it has been noted that adjustments such as adding Ethical issues are central to longitudinal additional households to a longitudinal studies, including those involving study might be cumbersome where the collection of biomarkers. The difficulties with funding and capacity panel discussed whether children can may exist. The audience agreed it was consent to the collection of biomarkers important that in-country partners and whether consent should be were made aware of these efforts, and renegotiated at a later stage in cases opportunities should be seized where where biomarkers are archived and feasible. used for purposes different than those designed in the original study. It has Strong partnerships and capacity- been noted that Birth to Twenty Cohort building can further develop longitudinal study pioneered a lot of the discussion research in low income countries. By on ethics in South Africa. The rule used discussing the experience of INDEPTH was “if children say no, they stay out”. network, the panel touched on the Importantly, the ultimate decision about challenges faced by longitudinal studies what should be done with biosamples in developing countries’ contexts. at a later stage rests with the ethics Building partnerships with institutions in committee of the Birth to Twenty project. the North, ensuring the local ownership In the case of the US Add Health Study, of the study were crucial in allowing participants could choose whether to the network to shift the focus of their give their DNA for study: 96 per cent work from simple documentation of of the participants agreed to do so, but morbidity to collecting new biomarkers, only 86 per cent of participants agreed disaggregating data by age/gender and to have their DNA samples archived. showing the relationships between Another ethical question touched upon different variables. In particular, making in the discussion was the issue of sure that at least a part of the staff’s providing feedback and information to salary was paid by the Ministry of Health

10 • Meeting Report - Cohort and Longitudinal Studies in Low and Middle Income Countries UNICEF Office of Research - Innocenti of Ghana was crucial to the success of of research within the Young Lives study, the project. such as early marriage, Female Genital Cutting (FGM), school violence and the life-course, were picked up primarily in THE PRACTICALITIES OF qualitative data. COHORT AND LONGITUDINAL Tracking is an area of concern for most RESEARCH longitudinal studies. Tracing people in developing country contexts, especially where rates of migration are high, might This panel focused on three areas: be a difficult task. The INCAP study qualitative components in longitudinal from Guatemala illustrates some of the studies, the problem of attrition and challenges: 4 per cent of participants tracking, and the use of computer- could not be traced at all; 11 per cent based software for conducting surveys. died with most deaths having occurred Summary outcomes are described in childhood; 7 per cent migrated out below. of villagers; and only 78 per cent could participate in the study at a later stage. It Qualitative research and mixed-methods has been suggested that while designing approaches can add value to longitudinal longitudinal studies, it is important to research design. Including a qualitative collect data on factors that might predict component in longitudinal studies is attrition. It is also important to collect important for a number of reasons: first, data on multiple entry points, such as it can show how associations between neighbours, parents, siblings, during variables work; second, it helps to the first rounds of the study. At a later identify questions for surveys and can stage, it is important to engage children thus inform survey design, with the as they grow up and acknowledge latter in turn informing the next round their increasing autonomy. The issue of qualitative research; third, qualitative of tracking households participating in data adds depth to processes beyond the study should be weighed against survey findings; finally, it illustrates that practical issues involved in this work children can be competent informants and should be located in the context in and it allows researchers to link children’s which the tracking is done. The World individual biographies to children’s Bank study in Tanzania showed that development and broader societal tracking eligible households in Tanzania processes. Whereas the quantitative involved thinking about how to reduce component of longitudinal studies costs, how to optimize travel time, how demonstrates the scale of the studied to equalize workload, whether to hire phenomena and provides numbers, the additional people, and how to check the qualitative component adds depth to accuracy of information collected. the study. The cases which quantitative people might consider to be outliers will Computer assisted means can be used be of primary importance for qualitative to improve data collection. Computer- researchers. As the case of the Young based programmes for carrying out Lives project demonstrates, qualitative surveys is increasingly becoming more research might be rigorous: new areas common. However, as illustrated with

Meeting Report - Cohort and Longitudinal Studies in Low and Middle Income Countries • 11 UNICEF Office of Research - Innocenti the example from Surveybe in Tanzania, their research findings so that policy- one of the challenges of using such makers and government officials could software at the later stages of the study use them. More projects of this kind will is linking previously collected data be necessary in order to ensure that with the data generated in a new way. the messages from longitudinal studies Using computer software for surveys reach policy-makers. allows avoiding most of the routing errors through using an automated Local ownership is important in ensuring routing system. It also allows avoiding that the results of longitudinal studies distraction caused by the necessity to are taken on board by policy-makers. skip multiple questions in the survey. The examples of longitudinal studies The data gathered through the software in Jamaica and Mauritius which had a can then be transferred to Stata or other big policy impact in a whole number of analysis packages. areas in their countries illustrate that the local ownership of the study is important in translating research findings into the COHORT RESEARCH FOR policy-making process. For instance, PROGRAMME AND POLICY the results of the Birth cohort and Profiles cohort project in Jamaica which illustrated the importance of parenting education on children’s well-being led to This session addressed the questions important policy changes at the national about the ways in which longitudinal level. By having brought the study studies could be more effective in findings into the national domain, the making policy and programme impact. study in Jamaica was the driver behind Ensuring effective communications, the adoption of the Jamaica’s National including wide dissemination of Parenting Policy in 2012 and the design messages and building local ownership of parenting programmes. Likewise, the are all identified as important ways to Joint Child Health Cohort Project study increase research uptake. Summary in Mauritius had a huge impact on the outcomes are described below. government’s decision to adopt a free pre-school program in the 1980s: at Having an effective communications the moment, Mauritius has 98 per cent strategy is critical to policy-influencing. enrolment in pre-school institutions. Translating research findings into the It has been stressed that the success language understandable to policy- of longitudinal studies in Jamaica makers is an important part of being able and Mauritius was based on the local to translate research into policy. It has ownership of the study. When research been noted that academics are often not funding and research capacity is coming the best people to ‘translate’ research from the outside, it is difficult to achieve findings into lay language, therefore a similar scale of impact, because of the collaborating with journalists or training credibility issues involved, lack of local people to do communication work is institutional capacity and because of important. This might require additional volatility of funding. resources and funding. For instance, UNICEF funded several studies in South It is important to share findings broadly Africa to produce short summaries of across different stakeholders able

12 • Meeting Report - Cohort and Longitudinal Studies in Low and Middle Income Countries UNICEF Office of Research - Innocenti to influence research uptake. Policy- Long-term projects tackling broad makers are not the only people who can questions is what funders expect to see in influence policy-makers: other stake- longitudinal studies. While government holders can also bring messages to the officials are often interested in finding government. Therefore involving others answers to short-term policy-specific such as advocacy groups or NGOs questions which are on top of the political that would be able to communicate agenda, grant-giving institutions and and carry messages from the research international organisations are often community to the policy-makers could interested in strategic research tackling be important. In some contexts, these broader questions. Thus funders could be international organisations, present at the meeting stressed that such as UNICEF, or think-tanks; in other they are interested in innovative broad contexts, these could be people in the studies with long-term commitment. research world who have close links to For instance, strategic research on the government or national institutions. poverty and inequalities will remain one of the priorities for ESRC. Funders Credibility and public image is also stressed that the long-term important for policy influencing. The sustainability of longitudinal studies case-study from Jamaica illustrates and the institutional ownership is the that in order to manage tensions that direction cohort studies should take. arise between policy-makers and academics, credibility is important. Ensuring sustainability is a pressing Governments privilege figures in the issue for most longitudinal studies. research community that enjoy public Longitudinal studies gain value with age. credibility, because public opinion Building local ownership was argued to matters for politicians. It is important be an essential component of long-term to build credibility by participating in sustainability of cohort studies. Drawing radio talks, by attending programmes on lessons from how INDEPTH network and awareness programmes, as the in Ghana evolved from a project into an public sphere matters when it comes to institution, several points were stressed. decision-making. First, the local ownership is central for the transformation, with local government supporting at least some aspects of SUSTAINABILITY AND the evolution. The contribution of the OWNERSHIP government to maintaining human resources is vital in demonstrating commitment, even if the Ministry pays only a small proportion of staff salaries. This panel addressed questions Partnerships between Southern around maintaining sustainability of and Northern-based institutions are longitudinal studies over time, ensuring important: participation in trainings, local ownership in developing countries, knowledge transfer and engagement of sharing data and maintaining trust of students in the implementation of the the study participants over the rounds project is crucial to capacity-building. of data collection. Summary outcomes Finally, transparency and accountability are described below. – being able to grant open access to

Meeting Report - Cohort and Longitudinal Studies in Low and Middle Income Countries • 13 UNICEF Office of Research - Innocenti reports and documentation about participant follow up and avoid high how money received from donors levels of attrition. The panel returned to is spent – is also important for long- the problem of attrition which remains term sustainability. The importance of one of the most significant challenges engaging governments and national of longitudinal studies. Therefore agencies in Africa in discussions about maintaining trust of cohort members the value of longitudinal research was was argued to be essential for the stressed. It has been suggested that long-term sustainability of longitudinal researchers involved in panel studies research, especially in developed could form a coalition and present the country contexts where rates of attrition value of longitudinal studies to ECOWAS are high. One of the strategies to do so or other political fora. is to engage children once they mature and share with them the value of social Data sharing and open data access are science research. being increasingly demanded. Sharing data and open access are becoming an imperative to ensure the long-term COLLABORATION AND sustainability of longitudinal studies CREATING A COMMUNITY OF and scientific research in general. However, it has been stressed that data PRACTICE sharing does not always have to be open access: for certain kinds of data, especially of the sensitive nature, ethics This panel discussed the opportunities committees should be able to make and challenges inherent in collaborative decisions about what and when to share longitudinal research projects. Drawing data. Submitting data sharing plans on the experience of the COHORTS is a requirement for grant proposals network and the Society for Longitudinal submitted to the Wellcome Trust. and Life-course Studies, it was noted that However, rather than advocating open networks could lead to the emergence access, theTrust encourages fair sharing, of centres of excellence in different which does not oblige grantees to make countries; they can also become all the data available on the same day. platforms for training students and early In particular contexts, the obligation to career researchers. Yet, to maintain the share data might come in conflict with collaborative endeavour, the network the institutional capacity of distinct had to overcome some challenges such longitudinal studies. For instance, the as maintaining funding, harmonizing INDEPTH network described challenges data across different countries, deciding with limited capacity to analyse all whether the study should concentrate on collected data, lack of training and analysing the data already generated or inability to publish results in high quality whether further data should be collected journals. Once some of the issues were and communicating the results of the resolved, the network could publish the networks. results of their research and share data responsibly.

Maintaining trust of research participants is an important step to encourage

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CLOSING DISCUSSIONS WHAT IS NEXT FOR LONGITUDINAL STUDIES?

This discussion explores future avenues community approach could lend value for longitudinal research and identified was also raised. One such group looking areas where collaborative work is at psychometric measurements cross- needed. In particular, special attention culturally was proposed, with many was paid to the question of knowledge participants echoing the support. It could sharing, technical and methodological explore the best ways to ask questions expertise across studies and countries; around language assessments, ways fostering research uptake to policy and to measure executive functioning programmes, and creating a global or maternal depression in different results network of longitudinal research. contexts. Another could work on creating ‘short batteries of questions’ in specific An active Community of Practice could thematic areas where demanded. further encourage learning and sharing and build capacity among new studies. It was also considered important to Links could be created with initiatives demonstrate what researchers and such as Human Hereditary and Health policy-makers can do with longitudinal in Africa (H3A) which deals with many data and highlight the questions that similar issues around consent, data longitudinal studies can give an answer sharing and ethics. Cohort studies to which cannot be answered otherwise. focusing on children’s development As a result, Symposium participants could also learn from health and felt that the group could contribute to retirement surveys, which have a better and wider documentation and harmonised survey instrument for sharing on the ‘absolute advantage’ ageing people in different contexts. of the longitudinal approach. This could take the form of best and worst One practical suggestion was to consider practice examples of research uptake to creating an inventory of the existing policy and programmes. Creating links longitudinal surveys and questions. between country impact evaluations The repository will also allow cohort and longitudinal research activities studies to advance techniques and tool could also provide opportunities for development, ensuring comparability longitudinal research to feed into policy of measurements, increasing implementation and reform. accountability and data sharing. It could also allow longitudinal studies to There has been a call to strengthen use the power of generalizability and institutional capacity and local comparison across countries which few ownership in the South. It has been studies can boast. suggested that partnering with already existing studies in the South could be Creating technical working groups with hugely beneficial for both Northern specific time-limited tasks where a joint and Southern partners. Strengthening

Meeting Report - Cohort and Longitudinal Studies in Low and Middle Income Countries • 15 UNICEF Office of Research - Innocenti local capacity to work with the data – training local statisticians and social scientists– was also stressed Another suggestion was to form a reference group with studies from both developed and developing countries which could organize workshops on targeted areas.

Finally, there was a call to form a group which could explore future opportunities for longitudinal research and look for ideas that could revolutionize social science in the same way that Hadron Collider revolutionized natural science. The group considered the potential value of a collaborating centers approach for child and adolescent wellbeing. This could include synergizing results across studies, possibly identifying a core set of measures that would allow comparability across studies, and explore the feasibility of a ‘global’ cohort that responds to the data demands of the Sustainable Development Goals.

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Meeting Report - Cohort and Longitudinal Studies in Low and Middle Income Countries • 17 ©United Nations Children’s Fund (UNICEF)

UNICEF’s Office of Research, Innocenti For more information, please contact Piazza SS. Annunziata, 12 50122 Florence, Italy Dr. Prerna Banati Tel: +39 055 2033 0 Chief, Programmes and Planning Fax: +30 055 2033 220 UNICEF’s Office of Research – Innocenti [email protected] [email protected] www.unicef-irc.org